Day -1 UNTIL TRANSPLANT
Hunter getting transfused with Red Blood Cells. He also got Platelets today. They are stocking him up so that he's got some juice before his transplant.
Had to get some tears out tonight. I've been gritting my teeth all day to prevent them from coming.....but they finally broke out when Zen asked how I was doing. He was laying next to Hunter comforting him and I didn't want to go over next to them where Hunter could see me, even though that's probably what I needed most. I felt guilty for feeling weak and very sad and kept telling myself that there will be no time for crying once we begin the process of the Bone Marrow Transplant. Once tomorrow comes, in my head and in my heart............I need to stay strong. But wow..........this is going to be really hard. We had only minor issues today and I feel as if that is NOTHING compared to the nightmare that we are about to experience. I'm frightened to death and I've never been so scared in my life. I started to get a little angry again as well. In fact, I got quite pissed. Pissed that this is happening, pissed that we have such an uncertain future, pissed that Hunter's life has been one battle after another, after another and he's not even 3 yet. He's such a sweet, little, innocent love and it just isn't fair. He still has no idea what he's about to endure and how scary the next 3 months to the next 3 years are going to be.
Hunter started feeling nauseous last night and it has continued throughout today. He's thrown-up a good bit and we are now back on morphine intermittently. He seems to be in a good bit of pain and it could be the side effects from the conditioning this last week finally starting to kick-in. He's been sleeping all day and only wakes up when we need to change his diapers and get his skin clean. He's miserable and uncomfortable and constantly calls out for mom and dad. We snuggle closely and with all our hearts.
Two children have been sent home in the last three weeks to go to heaven. One is peacefully already there. The pain that I feel in my body when I think about it travels throughout me with serrated knives and I honestly can't bear to think about it too long. I walked by their rooms often when they were here and have images in my head of their sweet faces. I feel as if their fight needs to be celebrated.........yet at the same time.......there is such sadness that follows....it erases all my hope. Zen and I use to make an effort to not get to know anyone else on the floor because of this one brutal truth.......some kids don't make it. But after being here now for 6 months - we can't help but acknowledge the other parents and children that are living within the same walls of hell as we are and offer some sort of smile in passing letting them know........we know exactly what they're going through.
Just as Hunter purged some ugliness today..........I feel as if I had to do the same. My anger and sadness has expressed itself and now it's time for it to be put in the trash can and saved for some other day.........like never.
We have not given up hope, we have not given up happiness and we have not given up on Hunter. We never will. He's been amazingly strong through all that he's had to go through and he will continue to fight this beast and impress us one day at a time. And that's seriously all we can do is take it and appreciate and celebrate...........one day, one hour, one moment at a time.
Death of a Superhero
A Family's Story about Courage, Bravery and the Defining Moments of LOVE
Our sweet, lil' baby love lost his battle to AML Leukemia on March 8, 2010. We fought long, hard and very aggressively for 2.5 years, only to have his cancer come back for the fourth time to finally take his life. He was only 3 years old.
This entire blog is about Hunter's amazing journey. It's about his life and his love......his determination and his courage.......his absolutely, brilliant personality, and the affect he's had on people all over the world.
He's left an unimaginable footprint on this earth and has changed the lives of thousands of individuals. People who didn't realize how precious life was, now live it with extreme gratefulness. People who took every minute they get to spend with their children for granted, now savor every last second. And people who weren't quite sure what love is all about, now love deeper, love stronger and love with every ounce of their soul.
People all around the world have shared their love, their well wishes, their prayers and their inspiration, and we could have NEVER achieved as much as we did without them. We are humbled by their generosity & their true friendships & are forever grateful for every last person that has come into our lives through our experience with Hunter. He was our precious baby love who we loved and cherished with all our hearts and we are forever crushed and terribly, broken-hearted.
Dance in the clouds baby cakes. Mom & dad are watching proudly & you will remain so very close to our hearts for all of eternity.